Wednesday, July 10, 2013

Kids With Special Needs Around The World: India

This is another guest post in the Kids With Special Needs Around The World series. Deepa Garwa is mom to Aarshia, a beautiful 6-year-old with Down syndrome, and Aaryamann, age 11. They live in New Delhi, India; in keeping with the country's joint family system, the grandparents live with the family. Deepa works as a secondary school teacher, and her husband is a government finance officer. Deepa writes the blog Down Syndrome Friends; stop by and say hi!

My first question to the doctor, when I first heard the term
"down syndrome," was "How long will it take to cure?" Not knowing
that my life was to be transformed, "changed" would be a mild word to
use. With a 5-year-old son, a daughter was the perfect gift to get and I fell
in love the instant I saw her face and those beautiful dark brown eyes. We
named her "Aarshia" which means "divine" because there was
something angelic about her face, something that I couldn't comprehend then,
but she looked surreal to me and I know now why.

Though this doesn’t happen every day here, intentionally
or unknowingly, the paediatrician and the doctor didn’t tell us about Aarshia's
diagnosis at the time of her birth. We only got to know a few months down the
line, when we took her to another paediatrician for her cough and cold. One
look at her and he announced"She is not normal how come you don't know?” With that stethoscope on her chest, he added "She has some heart
defect too."

We both just stood there, holding each other, trying to
understand if it was our angel he was talking about. The whole world, our
lives, our dreams, and future changed in that moment. The denial, anger,
crying, praying, non acceptance.... We went through the entire process, from
being awake on endless nights to howling through the day.

Well, the long and short of it is that it took us a good 6 months to make up
our mind if we wanted to go ahead with the surgery. What with the initial
shock, overwhelming emotions and to top the standard reply of doctors to not go
ahead with the surgery because sooner she is out of her miseries the
better!!

But as they say, better sense prevailed. The love of our child, support of our
loved ones, the research, meeting with other parents made us make up our
mind and go for her open heart surgery. Since that day, there is no looking
back. (I still feel the guilt pangs for taking this long to decide.)

The time that it took for us to prepare ourselves for the long battle can also
be attributed to the social stigma here attached to the parents of children with
disabilities. Society as a whole is insensitive and blames such a birth on
parents' "bad karma" or sins from their past life.

Some estimates say that India has 12 million children living with disabilities.
Only 1% of them have access to schools and 80% of them do not survive past age
forty. Disability here is still functioning in the realm of social welfare
instead of a rights perspective. Teachers are not trained and schools don't
have the infrastructure to deal with children with disabilities. Neither are
paediatric wards of hospitals equipped to deal with them. The attitude of the
medical fraternity is the worst. They are the first to come in contact with the
parents and they are plain insensitive and indifferent, not knowing much
themselves.

When we asked "What is Down syndrome?" to a doctor after the initial diagnosis, we
were told "They remain happy, behave like kids all their life and also
like music"—that’s it!! That’s all he knew and like a menu for a dinner,
he declared what we were going to have for life, and he was not alone. People in general are unaware because until very recently, our children
were only confined to homes. Without knowing better, people get awkward in
their presence. Especially at public places they would either stare at our kids
blatantly or look through them as if they are invisible.

When one of my colleagues
met Aarshia for the first time, she got rather uncomfortable and ignored her
completely. In one more incident, another colleague complained that
intellectually disabled kids should not be taught with "normal children"
and most of the staffsupported
her ridiculous opinion, without realizing my presence in the room. And
both these colleagues are "teachers” (!!) supposedly dealing with
"special" children firsthand.

Another mother of a Down syndrome
child shared how two so-called special educators and other
teachers from her daughter's prestigious school blasted and criticized her because
her three-and-half year-old daughter soiled her pants and pushed a child. Prejudice is very difficult to beat. I know, we can't brush everybody with the
same paint and one does come across wonderful people who look beyond the
disability, but they are few and far between.

People's attitude is not the only thing parents have to fight with. There are
other things like early intervention and therapies too. As far as the therapies
go, they are available, but one has to either pay (trust me they are not cheap)
for them to have at home or stand in long queues at the government hospitals and
we all know how convenient it is for us parents of special needs children. This
is one of the reasons why most of the children don’t get any therapy at all.

With new laws and amendments, schools cannot say “no” to our
kids but schools flout it openly. They will take kids who are wheelchair
bound or are deaf over kids with intellectual disabilities. So either
you go fight and waste all the time and energy that you have got left after
caring for your child, or your child goes to some unknown smaller school with no special
educators or needed set up. I know few such parents whose kids were thrown out
of the school for not being able to cope and they were still in pre-school! However there are good schools too, which are sensitive and are working hard
with our kids. It all comes down to how you as a parent are ready
to fight for your child’s rights.

India as a country is comparatively new to disability
rights. There are so many other problems such as over-population, unemployment and corruption that the issue with our children always takes a back seat. With
awareness comes sensitivity and there is a long way before we can make our
society, sensitive to our children, which in my opinion is the biggest concern
of all.

The best thing about living in India is you get support from your families, and
all parents with special needs children know the importance of such support.
There are grandparents, uncles, aunts, cousins and friends who are there for
you 24 x 7. People don’t need counselling from professionals because we
have such a strong support system who are more than ready to help, which makes
up for lot of other things that we don’t have.

Yes, things are changing. Parents are demanding. They know what is happening
around the world, they are asking questions, they are sending their kids to
schools and hobby classes and dreaming for a better future for them. They are
sensitizing people. I know it will take time but we will get there. We are at
a better place than where we were 10 or even 5 years ago, and I am certain the
future of our kids holds much more promise than it ever did.

I can attest to the ignorance in India I went there and people were referring to be as "the sick child" right in front of me compared to people in India the people in other countries are quite educated about disabilities.

I cannot believe there are only 12 million children in India with disabilities. I am sure that is what the official statistics say, but it's an additional tragedy for the country to ignore that there must be many, many more.

Aarshia is beautiful and her mother writes so movingly. Thanks for this great post.

I often think that somewhere in the world there is a little girl just like our daughter. These girls share the same rare condition but one is happy, with butterfly orthotics, and attends a school where she is valued and appreciated. The other is sad, lonely, in a dirt corner, with untreated orthopedic needs and receives no education. I am thankful for the advocacy of people with disabilities in the United States and thankful that our family has access to great healthcare (unfortunately, though, the family down the street may not). Things aren’t perfect in the United States (US ranks 26/29 for child well-being in rich countries—UNICEF, April, 2013 http://www.unicef-irc.org/Report-Card-11/) but things are much better here than in many other parts of the world.

Hi, thanks for writing. I understand your emotions and also feel bad for the sad girl wherever she is. The fact is lot of children with special needs are attending schools in India. I can't comment about kids in rural areas as they get much lesser opportunities than what we living in the capital get, but they still have good lives because one thing is sure..no family abandones the child..there may be very few exceptions but the general thumb rule here is that no parent would put up their child for adoption, they would not ill treat..yes because of lack of awareness they might not be able to give the best opportunities available...but they stick by their children...

I am not a doctor nor a special education teacher. However,I believe your little daughter, Aarshia, looks very intelligent. Her eyes are bright, and her face lights up with a beautiful smile. She appears to understand very well when she plays (as per her pictures), and she seems just like all typical children! Can't think of how anyone would look down on this beautiful child.

I wonder if the diagnostics of Down syndrome was accurate for her? Did they test her DNA to confirm? Of course, whether she has a intellectual disability, or Down syndrome, or NOT, she is a wonderful child. But I think it does not hurt to double-check the doctors' evaluations. Sometimes, some doctors out there are totally...incompetent!

Even if the doctors are correct, still give your daughter all the education opportunities you can! Raise the expectations for her achievements, and never let the thought about her intellectual disability hinders your expectations and hope for her success! I think you do have a bright intelligent daughter!

Thank you so much for writing..I had the biggest smile after reading your comment. Yes, she is beautiful and didn't use to look like a typical downs child and may be thats the reason doctors didn't think she was one at the time of her birth. But we got the chromosome tested and she has Trisomy 21. She is also very bright for her peers ( down syndrome) and except for speech, she is pretty much normal. She is the light of our lives and I am sure she will make me proud one day...you can see some of her videos on my blog aarshiandmama@blogspot.in Thanks again for writing...God bless you!!

I love this post! I am living and serving in India at an orphanage for kids with special needs, fostering 7 children in my home with me. I can relate to a lot of what was written! Great post, thanks for sharing!

Aarshia is cute- I hope I spelled her name right!. Posts like this one remind me to be grateful I live in America. My advice is dont let Aarshia's learning issues stop you having high yet realistic expectations for her.

Dear all, Iam Divya an Indian. I have two years adopted girl child , unfortunately she is spastic CP child. I am not getting support for my family. I am working and it is very difficult for me to take care her. I request you to tell me whether we any have treatment for my child or any home which can take care of her

Hi! I just loved this post. I am a Rehabilitation Therapist and a special educator. It reminded me of my student whom I miss a lot. He too had DS and was an extremely lovable and naughty child. His happy face and naughty stuffs use to fill me with enthusiasm to fight for his rights in the school so that he could get access to all the opportunities along with his peers.